Archive for the ‘Parker’ Category

Happy 10th Birthday Parker!

Parker Jan 09'

Parker, aka Mr. Stinky…. today we are celebrating your 10th birthday without your physical presence but with a flood of memories of all the happy times and the sad times where we had to watch you suffer. At times it is hard to celebrate because selfishly… we would like to be able to hold you.

Mom, Dad, Duncan and Rubee hope that you guys are having a blast today! Your innocence while on earth was a blessing in many ways. Now you get to live out the promise that God has promised all of us that at times seems so far fetched because we just cannot imagine the infinite glory it will be. We also hope that you and Brisan are able to soak up all the activities that makes your heart full!

Your huge smile and dipples brought smiles to all! Your feisty attitude with that occassional teeth grinding when mad, really allowed your personality! We sometimes wondered how you would really react if Niemann-Pick Type C wasn't in your life. We thought this often about a lot of things for you both.

Parker Duncan Brisan Sept 2008

Your passing on January 23, 2015 was the “bookend” for you and Brisan’s physical story yet your story really just began. Your legacy and story will carry on for many years influencing many families when they read you and Brisan’s struggles. Although great pain in many eyes, you left a gift of hope and ultimate compassion. A true testament to the real peace that God provides, you looked like you were sleeping that day. No more pain, no more struggles and yet he calmly called you home during that time. The final minutes of earthly life showed us HIS presence only promotes peace and love. Your beautiful eyes were shown to us one last time.

Parker :(

Last year we had a Charlie Brown party for you where you seemed to be playing “possum” while you slept during it all. Shortly after everyone finally left you woke up and seemed well rested! We know you are a stinker! That is one of many reasons you’re our Mr. Stinky!

Parker's 9th Birthday Jan 2015 (his last)

Little did we know that your time was so imminently near… just 10 months after Brisan passed. We know you missed him. Our hearts wept deeply and secretly inside because we knew that not many birthdays were left all while we were grieving for Brisan.

Thank you for being our son, a brother, and a friend to all whom were able to meet you. We love you Parker. Happy 10th Birthday, your first in heaven! Your celebration of life has to literally be “out of this world.”

We will celebrate you this weekend coming up big guy!

Parkers Balloons 1-30-15

Share

Deja Vu – Autopsy Is In

Parker Stults's Autopsy

Parker At Family Camp 2014

Parker At Family Camp Memorial Day 2014

Well… seems to be a bit of deja vu, wouldn't you agree? We shouldn't have a feeling of “I've done this before”, meaning we are sharing news of the Autopsy of Parker or Brisan! Some may disagree in the first place of doing an autopsy with a child of a rare disease but it provides us peace of mind and insight into what was going on behind the scenes in their body. It also may help the Niemann-Pick disease community in the future.

It flat out sucks all the way around.  Read the rest of this entry »

Share

Parker’s Funeral Service & Eulogy

Tomorrow, February 23 will mark one month since Parker passed and went on to live free from his earthly body. In great joy for him and Brisan, it still leaves us very fragile and sad while we journey down this immense path of grieving. Our journey with Niemann-Pick Type C in some ways have ended but it still is a great part of our life story.

Below you will find Parker's funeral service & eulogy. We appreciate everyone that was able to make it out to celebrate Parker and show your support. We know that in just 10 months you'd be having the same thought of “weren't we just here?”. It took a lot of strength for you to come back for Parker and we appreciate that. As we continue life and attempt to find our new daily normal, it still seems strange to look over at their beds to know they are physically not here.

We want to thank the entire PV Staff for helping out with this.

Read the rest of this entry »

Share

We Love You Parker!

Parker Stults Jan 4, 2015

Parker Jan 4, 2015

2 Weeks ago today Parker went home to see Jesus and Brisan. I like to say he is experiencing the ultimate vacation package. We can only imagine the joy he is having with no more Niemann-Pick and his earthly inabilities that prevented him from experiencing a typical childhood. They only have a childhood to live a lifetime is a very true and stark reality now that we’ve come full circle. What can we really say other than “did this really happen”? We love you Parker! No words can accurately describe how we are feeling right now. All this in under a year. Who would have thunk it.

Timeline of Events

Parker passed peacefully at home on Friday, January 23rd around 1:55pm. We were surrounded by our friends and family during this time. The room was eerily quite while Parker took his last few breaths which were few and far in between. As the morning started and progressed, so did his breathing which indicated to all of us that he was in big trouble with the reality of his homecoming in the distance future.  Read the rest of this entry »

Share

T’was The Day Before Christmas…

Well hello there! It has been a few months since we last updated everyone on our blog. Our emotions have been a whirl wind of ups and downs which are to be expected but until you FEEL them… there is no preparing for the response of how you truly feel in that moment. A typical day of emotions rise with a constant thinking of Brisan. You still think about how unreal at times it really feels in brief segments but you always turn back to knowing he has been “healed”. That doesn't make it any better…. let's be truthful in the matter. We still have his bed up and pretty much the way he left it. Not a moment goes by you don't look over that way visualizing him sitting up and watching TV or something.

At times when you love on Parker you see glimpses of Brisan and for a tad second you feel guilty because you don't want any of your feeling to take away from the precious moments left with Mr. Stinky. He has been a fighter. When he is in a good mood… he makes an occasional “humming noise” with a slight groan. It is kind of like his “Master P” lyrics. Make them say “ummmmm”. (I am sure not all of you will get that 🙂 ).

Pete's Puffs Delivered

Tissue Delivery to Children's Mercy Hospital Pete's Puff for Brisan

In the New Chapel at Children's Mercy Hospital | KC

So in honor of our Bubbas, Jennifer orchestrated a Tissue drive so we can help Children's Mercy Hospital out because again… who wants to wipe their nose on sandpaper? Bueller.. Bueller? After 606 boxes (thank you guys for all of your support on this!!!) and sitting in our dinning room since the end of August ( I know… I know…), we carefully labeled them with the Pete's Puff's logo and a quick story about why they may have this box of tissue at their hands to use. So 606 individual boxes and 13 moving boxes packed up… we made our way down this past Monday, December 22nd to deliver them to the volunteer/ chapel / care team to quickly disperse.  Read the rest of this entry »

Share

5 Year Anniversary

Tomorrow August 8, 2013 will mark the 5  year anniversary of what we call “the phone call” regarding to Brisan and Parker's Niemann-Pick Type C disease diagnosis.

It seems that every year is going faster and faster as we move further into the the upcoming years knowing that time isn't on their side. However, we do have some good things to celebrate and not to make this post all about being sad. We will be moving soon to a new home that will allow us some positive situations. The down side is we will be giving up other things like the boys' school teachers, nurses, and even friends we became close with. The whole situation seems to be showing much favor for us. Duncan will be starting Kindergarten here next week! Their new school seems to be really “going to work” for us already. I hope that they keep that level of excitement in the upcoming future.

Since March I had started a new opportunity and have been focusing on leveraging my skills to be a key contributor to my team. Everyday I look forward to bringing my “A” game and putting a positive stamp on it. We've not had any foster kids in our home since Memorial Day weekend. It has been very nice most of the time not to have that additional responsibility… at least that is how I feel :).  Jennifer has stayed pretty busy herself.

~ Mike

 

Share
Subscribe to our list

Categories
Archives